Wednesday, December 2, 2009

Anniversaries.

One year ago today I had the flare-up that changed my life. It was the first time I had one of these episodes and didn't have much recovery. It was also the first time someone in my life really pushed me to follow up with a doctor and figure out what was going on. Despite all the difficulties of the past year, I'm still optimistic about my future and confident that things will get better.

Friday, November 20, 2009

Good and Bad

I know I should be sleeping in preparation for my group meeting tomorrow, but I can't sleep. I finally had my long awaited follow-up appointments with the rheumatologist and neurologist this week. Some good news, some bad. The good news, I don't have lupus. I wasn't surprised to get that news, but was a little peeved that I had to take a 30 minute bus ride, wait an hour, and pay $20, just to have 2 minutes with the rheumatologist. She's really sweet and was very thorough, but all she had to say was, "you don't have lupus" and that could have been done over the phone.

Today's appointment with Dr. C was much more eventful. I still had to wait an hour, but I got my money's worth. Since they never seem to listen to me, I came to the appointment with a list of my current symptoms that I gave the doctor as soon as she walked in the door. I included descriptions of each symptom and told her I wanted help with all of them. We discussed them and then she explained that she only felt comfortable working on two at a time and we can work on the list over the next few appointments. She suggested which two she thought were most important (bladder control and depression), but gave me the power to choose which ones I wanted to work on. I explained that my ultimate goal is to get back to work and my memory loss and current level of depression are making it really difficulty to do anything. I mean, I'm terrified of getting lost again and I'm too depressed to muster a smile most days, so leaving the house only happens when absolutely necessary. That's not exactly compatible with most work environments.

Dr. C said there isn't much she can do for memory loss directly, but believed that my mood could be tied into the memory problems. She wants me to see another doctor at her clinic to be evaluated and determine the best course of action for the depression (he's a neurologist and psychiatrist). In the meantime, she wants me to start an anti-fatigue medicine that has helped some of her patients with their cognitive difficulties and mild depression. I see the other doctor in three weeks, though I wish I could have seen me today. Hopefully, the anti-fatigue stuff will help.

Since we're hitting three list items with one pill, she let me pick one more item and I chose bladder. I recently had an accident at home and it's honestly just as hard to deal with, emotionally, as accidents in public. I told her that I have some incidents of sudden emptying, but mostly my problem is urgency that leads to leaking when I can't find a restroom in time. She wasn't sure if my perception of the problem was correct and said that it's more common that I am not fully emptying my bladder when I pee and that could be leading to my problems. To determine the cause of my problem she needed to ultrasound my bladder when full and after I peed. Of course I'd emptied my bladder just before seeing her. She still wanted to do the ultrasound during that visit and presented me with a 12 oz cup of water. I drank 4 full cups before we were ready to do the ultrasound. My bladder was in fact emptying properly and she prescribed and once daily oral medicine to help with the urgency.

All-in-all the appointments went well. I usually take a list with me, but it made a huge difference to give a list to the Dr. and not wait for her to transcribe what I was saying. Or what she thought I was saying. Next time I want help with insomnia and pain.

Tuesday, November 17, 2009

I Need Sleep

I know that my struggle with insomnia is old news. I had trouble sleeping long before my diagnosis and I'm sure it will continue until the end of time. Unfortunately, my ability to function on little sleep or poor sleep has greatly diminished. Without adequate sleep, my symptoms are a nightmare. From the moment I wake up, my legs burn and tingle, I feel dizzy, my vision is unstable, and I have cognitive difficulties. Basically, when I wake up I feel similar to how I feel at the end of a long day. Not good.

This is especially true after my most recent episode (we aren't calling it an exacerbation yet) which has left me needing at least 8 solid hours of restful sleep. This isn't much of a problem usually because my schedule allows me to set sleep hours that fit my need. I lay down around 10 pm and on most days I sleep until 8:30 am (sometimes later).

The problem has actually become creating and maintaining the conditions I need in order to have a restful night of sleep. Even with a sleeping aid, body temperature, ambient noise, and room darkness can be sleep deal breakers. Sometimes it means needing 2-3 hours to get over the hump and fall asleep, but more often, it means spending the whole night in a semi-sleep state that results in the same problems as not sleeping plus a weird mental fog. It makes me anxious and I feel trapped inside myself.

I am battling this today. I am out of sleeping aids and even with all my efforts to exhaust myself, sleep is getting more and more difficult. The past few nights I was patient and made it over the hump. But last night I was never able to get over the sleep hump and spent the whole night trying to block out my surroundings and get comfortable. Last night was especially bad because everything bothered me. I even tried to sleep on the couch, but that didn't work and caused more problems. Now I'm in the fog. Ugh! I had so much I wanted to do today, but I don't have the strength or stamina for any of it. Maybe tomorrow, if I can get some sleep tonight.

Sunday, November 8, 2009

Humiliating.

Today I attended a National MS Society sponsored function for African Americans with MS. I was interested in this event because I don't know any other African Americans (AA) with MS and have not been able to determine if my ethnicity has any bearing on the progression of the disease, primary symptoms, etc. As with all things MS, there is no conclusive evidence that ethnicity has any bearing on disease progression. Of course there is some genetic factors that make MS less likely in AA families, but since MS is not purely genetic, ethnicity is only a piece of a very large and complicated puzzle.

However, the first speaker (a prominent AA neurologist) did mention something interesting. She said that AA tend to have more eye problems and more waist-down numbness and pain. This was really interesting to me since I tend to have a lot of eye and leg problems. I also noticed that almost everyone at the meeting used a cane or crutches and the others were in wheel chairs. This didn't make me feel good at all.

The second speaker was a researcher and his presentation focused on the genetics behind finding the cause of MS and even with my science background, I found him hard to follow. They also served lunch while he spoke, which meant a lot of focus on eating and very little focus on the science.

The final speaker was a marriage and family therapist with MS and he was there to discuss the emotional side of MS. I was looking forward to this portion of his talk until I received the handout. I identify as a Christian and strongly believe that my faith helps me deal with the challenges of MS. However, I DO NOT believe that I have MS because I lack faith. I DO NOT believe that prayer will heal me. I DO NOT believe that I should turn to God and not a doctor when I encounter disease complications. After seeing the handout, I wanted to leave, but decided to stay and give the speaker a chance. Perhaps the statements on the page were going to be debunked and he was going to support a healthy mix of religion and medicine. But he didn't. When he started saying that a person may think they have faith in God, but the presence of MS is proof that they've faltered, I packed up my things and walked out. I honestly don't care what people personally believe, but I refuse to be shamed and blamed for being sick. No thank you. I plan to share my displeasure with the NMSS tomorrow.

The meeting location was about 10 blocks from my house, so I walked there. I used both crutches and took my time getting there. It took me 20-30 minutes, and I had enough time to get my bearings before the speakers started. The journey home didn't go so well. I was exhausted when I left and fatigue heightens all of my symptoms. I stepped out of the building, looked around, and had no idea where I was. I stood there a moment trying to get my bearings and figure out which way to go, but I couldn't remember the right direction. I walked around a bit and finally stopped someone to ask for help. The very nice lady was more than happy to help me, she just needed to know where I was going. "Jackson Street," I told her. "Jackson and what?" I opened my mouth and nothing came out. "Do you know the address?" I said, "Yes, I'm going home." And I just stood there, trying not to panic, and trying to remember my address or my cross street. I started to cry. She smiled and said, well let's go down to Jackson and see if anything is familiar. Of course, once we got to Jackson, I was still lost. And then my brilliant new friend asked me if I had any identification with my address on it. YES!! My driver license has my current address on it! She graciously walked me to the front of my building and after I said a million thank yous, she waited until I got in the door and waved goodbye.

I can't tell you how terrified, embarrassed, humiliated, and demoralized I felt when I couldn't get myself home. I've always been afraid of getting lost, but there's a big difference between being lost and not even knowing where you're going. I've been afraid of this happening, but didn't think it would happen so soon. I'm trying to remain positive and not let this one incident discourage other solo ventures out of the apartment, but I'm shaken up. I don't like the severity of my current symptoms (I had a fall recently and my pain is out of control) and I think my doctors need to reevaluate my treatment and come up with better ways for me to manage. Because, I'm trying to cope, but I can't live like this.

Thursday, November 5, 2009

Progress.

I had a really productive day. Today is exactly one month after I was released from the hospital and the rheumatologist wanted me to get a full series of blood tests done today (to determine if I also have lupus). Since I hadn't been out by myself yet, Nilaja offered to drop me at the lab so that I only have to sit through one bus ride. The thing is that she leaves for work at 6:50 am and in order for us both to be ready in time, I set my alarm for 5:30 am. After I got over the shock of hearing my alarm that early in the morning, I managed to shower and get dressed without incident.

Nilaja dropped me in front of the building and I made it up to the first lab just as it was opening. I knew there were a lot of tests to be done, but I wasn't prepared for them to take 7 full vials of blood and a urine sample. Luckily, this lab is really good at finding my veins so it was painless. I was there for less than 20 minutes and proceeded to the second lab for another test. (I didn't know that I would have to go to two labs, but the first lab isn't equipped to do cryoglobulins. I'm glad I chose a site with two different labs in the same building.)

This time they only needed to take one vial of blood, but the experience was much worse. After explaining to the phlebotomist that I'd just had a lot of blood drawn from one arm and my veins roll, she rolled her eyes and said it's easier for her to draw from my right elbow. Well, if I learned one thing from this last hospital stay, it's that I have don't have to let anyone do anything to my body that I don't agree with. And when she pulled back the bandage and started poking at the still bloody spot on my arm, I pulled away and asked for someone else. She then explained that she was there alone for another hour IF the next person shows up or I could go somewhere else but she wasn't sure what labs in the Bay Area did that test. I smiled and said, "I'll wait." Empowerment feels damn good! Of course, just as I gather my things and start toward the reception area, another phlebotomist (a supervisor) comes in the door and manages to find a vein and draw the blood before I could finish complaining.

I didn't secure a ride home from the lab, so I took the bus. This was my first time on the bus since September and it went well. I'm not sure I should have been on a bus yet, but I made it home safely. I even stopped for a nice big cup of mostly decaf coffee (I dumped out about half and swapped the rest for milk and sugar). Of course the small amount of regular coffee they mixed into my decaf kept me buzzing all day long. And you know how frustrated I get when I want to sleep but can't.

I spent most of the day watching tv, but took a long break from that to apply for few jobs. That's right folks, I'm trying to get back to work already. Once again, I'm not sure I'm ready or how I'll make it through the day, but I have to try. I can't be afraid to go back to work. If I don't make it, oh well, at least I put in the effort. So far, I've applied for part-time and full-time administrative assistant and receptionist positions, since I think those will be the easiest for me to transition into as I rebuild my skill set. I sent three resumes today and will keep looking for other opportunities until I find something.

Sunday, November 1, 2009

Grateful.

I'm having a really bad day, but I don't want to talk about it. It's so easy to get bogged down with how bad things are and completely ignore the good things in my life. So, I decided to make a list of 10 good things in my life and all the ways I am grateful.

1. My wife. I feel happy/lucky/blessed to have someone who supports me through everything. Things have been rough over the past few weeks and she always steps up in more ways than I could ask. I especially appreciate all the shopping she does as I still don't have the stamina for a trip to the grocery store.

2. My mother's condition is treatable and follow up appointments yielded lots of favorable results. Once again, I don't have consent to disclose her condition, but I can say that my whole family is breathing a sigh of relief. The issue isn't resolved, but we have more answers and she has an excellent prognosis.

3. My sister. I talk to my sister a few times a week and it's a necessary mood booster. We also have very similar beliefs and morals, so if something is bothering one of us, it's easy to rant and release frustration.

4. My friends, especially Sophia, Susan, and Jamie. I think I've mentioned before that it's hard for me to ask for help and I like to do things for myself. Unfortunately, no matter how much I want to be the self-sufficient control freak, I am now facing challenges that require assistance and I'm grateful to have people around me that can help me when I need it. I appreciate all the help and support whether it was providing rides, company, information, reassurance, or advice.

5. My cane/crutches. Most of my problems lately have involved mobility and I'm grateful that I have my cane and crutches. Without them, I wouldn't be able to get around the apartment.

6. Betaseron co-pay assistance program. I'm back on the injections (boo!), but recently received confirmation that I have a $0 co-pay each month. Previously, I paid $50/month, so this is incredible.

7. Decaf coffee, peppermint tea, and baked potatoes. All three have made me exceedingly happy today.

8. Sleeping aids and techniques. Never underestimate the power of a full night of sleep.

9. Critical reading material. I mostly read online articles and love anything that challenges racist, sexist, ableist, sizest, homophobic, transphobic, and xenophobic aspects of society. I especially love having Facebook friends that link me to articles that keep my mind alive (though, I wouldn't mind not having things to read).

10. Health Insurance. I'm not sure what my life would be like if we didn't have health coverage. The coverage isn't perfect and I still pay a rather healthy amount out of pocket, but it's a huge relief to be able to go for care when I need it and not worry about footing the whole bill. We were uninsured growing up, so I know how detrimental the fear of medical bills can be on any family. I can't imagine going through all this without coverage.

Tuesday, October 27, 2009

Please excuse me

I keep wanting to update the blog, but there's so much on my mind. I'm not recovering from this last relapse as quickly as I'd hoped and I'm going on 7+ weeks with this headache. Even though I'm back on some of my meds, I'm having a lot of pain, spasticity, insomnia, and fatigue which is keeping me glued to the bed during the day. But I'm trying to stay active and get stronger. I was actually just in bed thinking that I'm ready to try to venture out on my own. I figured I'd head down to Solano Ave for lunch and a movie and then I froze, I couldn't remember which bus to take. That may seem insignificant, but I've taken that trip at least 50 times and shouldn't have a problem remembering how to get to one of my favorite places. It scares me to realize that even recent things are dropping from my memory. It's one thing to go through facebook and no longer recognize half the people on my friends list since I haven't seen or talked to them in years, but I'm starting to lose recent events. I'm not handling this well. I keep trying to be strong and give myself a chance to recover, but I'm so over this whole MS thing. I used to feel smart, articulate, poised, and driven, now my whole day is focused on trying not to pee myself, not hurting myself if/when I fall, not forgetting something important (like the stove is on). It sucks. I really wish I could just get to a point where I can mostly function.

In addition to my own drama, I recently received some bad news regarding my mother that has me pretty depressed and withdrawn. I don't know if she would mind me disclosing the exact information, so I will leave that off for now. But it has my siblings and me very worried and stressed. There's some talk of me going to my hometown for a visit to help with recovery which I will certainly do, but it's causing a little anxiety. I haven't flown since getting my diagnosis and I'm worried about dealing with the injectable kits, my cane/crutches, and going through the process alone. I'll make it through, I'm just adding more stress to a whole lot of worry and pain, which is why I wanted to go hide on Solano. If I do get the nerve up to go out anyway, maybe I'll write the number on my hand so I can get there and back without issues.

I think the sleeping pills are kicking in now. Everything's a little fuzzy.

Tuesday, October 13, 2009

Tests and Treatments

Now that I've gotten over the emotional side of being in the hospital, I think I am ready to talk about the tests and treatments that the doctors tried. When we decided to go to the hospital, I was experiencing numbness in both legs, pain in both legs, a headache, and the queen of all symptoms, blindness in both eyes. The blindness made us both panic because optic neuritis usually occurs in just one eye and I've never had sudden, total vision loss like that. We tried to avoid the ER, but after consulting the on-call neurologist, it was clear that I needed urgent care. We headed to the hospital around 8 pm on Thursday, September 24 and I was seen immediately and admitted. I was not a fan of the initial neurologist that was coordinating my care, but it was clear that he consulted with my neurologist on treatment ideas and even though I would have loved to be left alone to rest, I was able to walk out of the hospital with total sight and use of my legs. The following procedures started when I was in the ER and continued until the day I was discharged.

Head CT – Although I told the ER doc that I had MS and didn't need a CT scan, he insisted that it was standard procedure and wise for my symptoms of headache and acute blindness. CT scans are quick, I didn't need contrast, and it showed nothing abnormal.


Corticosteroid infusions - Once again, the doctors insisted that I do a course of steroids. My first infusion happened the night I was admitted and I did a total of 5. Since I was already on stomach medication and insisted they monitor my heart rate after infusions, I didn't have a strong adverse reaction. Unfortunately, the doctor neglected to order a sleeping aid for after my infusion, so I spent the first night wide awake, blind, and in a strange situation. Not fun!

MRI - On Friday, I met the neurologist and he insisted that I have new scans of my brain and spine done WITH CONTRAST. I explained to him that I have had bad reactions to gadolinium contrast in the past and did not want to endure that again. He claimed that a high dose of IV benadryl would alleviate any adverse reactions that I might have and told me that he couldn't identify the cause of this exacerbation without the contrast. I agreed to the procedure and I regret it. I am allergic to gadolinium. I knew that before I let them inject me with it and I'm still itching because of it. Never again. Also, the scans didn't show anything new.

Lumbar Puncture
- I don't remember if I had the LP on Friday or Saturday (I think it was Saturday), but this was my first introduction to Interventional Radiology. The doctor believed that my headache was being caused my increased pressure on my brain and the best way to test that was to check my cerebrospinal fluid. Basically, they numbed a spot on my back with Lidocaine, then stuck a thin needle in my back and collected spinal fluid. I was completely awake and laying on my stomach. It was so weird being able to feel the pressure and even feel a few drops of the fluid run down my back. After the procedure I had to lay flat on my back for 2 hours without moving. Unfortunately, there were complications from the procedure and I was left with severe back spasms and a low-pressure headache (more on that later).

Visual Evoked Potential
- I can't remember what day this test was performed, but I know it was after Sunday. On Sunday, I woke up and was completely blind again (there was some improvement on Friday and Saturday), so doing a test that required me to look at a screen seemed idiotic. I was not at all surprised to hear that my vision was markedly worse than the first time I did a VEP during my June/July hospitalization. For better or worse, it was these results that convinced the doctor to send me to an ophthalmologist and try more aggressive treatments.

Rehab Therapists
- On Monday, I was visited and evaluated by physical therapy, occupational therapy, and speech therapy. Unfortunately, I was too sick to participate in any of the evaluations, so they were postponed. Someone from each department came by each day, but I was very sick until Friday night and never actually had any full evaluations. I could have stayed until another day to be cleared by them, but it was unnecessary.

Ophthalmologist Evaluation - The first attempt for me to see the Ophthalmologist was Tuesday morning. The office was just across the street and I was taken over in a wheelchair by the charge nurse. I was not evaluated on Monday because as soon as I got to the office, I started puking and literally begged to lay down on the floor. The nurse knew she couldn't leave me like that and wheeled me right back to the room, where I continued to puke all over the bed and myself. The next day wasn't much better. They gave me a shot of some anti-nausea medication and put me on a gurney with a pair of paramedics. Once again, I made it to the office just in time to puke in the trash can (and all over myself, but was too sick to care), but this time they convinced me to stay and be evaluated. I was there for no longer than 10 minutes. I was first examined by a tech and then the doctor came in. The doctor was a jerk! Although I had tubes coming out of my neck, obviously couldn't sit up straight from the back spasms, and hold my head up for extended periods without vomiting, he thought it was smart to violently grab my head and jerk it to where he wanted it. Unfortunately for him, my reflexes were very much intact and I simultaneously screamed ouch and kicked him in the shin. The results of his examination were painfully obvious: I couldn't see due to inflammation in the optic nerve. Duh!

Plasmapheresis – On Monday afternoon, the doctor came in and told me he was sending me for a more aggressive treatment that should help alleviate my symptoms. It was around this time that he began talking about other conditions and assured me that plasmapheresis was the best treatment for any of them. In order to do this, they needed to insert a catheter into my neck. This was done on Tuesday in Interventional Radiology (my new friends). Once again, I laid on the table wide awake, the doctor numbed the area with Lidocaine, then cut into an artery in my neck and inserted a long tube. Attached to the tube were several ports that allowed medicine to be inserted or blood extracted. Getting the catheter was one of the worse parts of the stay. Not only was I awake and able to feel my blood running across my neck, but I could feel the tube in the artery. I also needed to keep it in for a week and built up a lot of anxiety around getting an infection or ripping the catheter out. Luckily, I had no complications and the hole is pretty much closed up. The first session of plasmapheresis also happened on Tuesday (second was Thursday, and third on Monday). The procedure was done in ICU and lasted about 3 hours. During that time, they remove all the blood from the body, send it through a centrifuge, remove plasma, mix the plasma-free blood with albumin, and then put it back into the body. It is completely painless. However, in order to stop the blood from clotting in the machine they mix it with citrate. Then, the citrate binds with calcium and the person can become calcium deficient. This happened to me each time. The feeling is really hard to describe. You start out with tingling on your face, then you feel feverish, then antsy, and then your heart rate drops. The treatment is a calcium injection (or 2) right into the catheter and relief is immediate. During my final treatment, we waited a little too long to start the calcium and the nurse panicked a little. Of course, my doctor walks in at that moment and questioned whether to go through with the discharge, but waited around for the calcium injections and saw that I was so much better and ready to go home. I don't know whether plasmapheresis worked or not. I didn't feel any different after the treatment versus before, and the discomfort of the catheter would make me question doing it again.

Cerebral Angiogram - When the doctor came to see me on Thursday afternoon (October 1), my most prominent complaint was headache. Since the moment I woke up on Sunday morning, I was experiencing the most excruciating headache that I have ever felt. Honestly, it was the worst pain imaginable. It hurt no matter what I did and any movement resulted in vomiting. By Wednesday, I couldn't sit up long enough to eat, I was using a bed pan, and even though it didn't relieve all of the pain, the headache was significantly better when I was laying flat and motionless. Every day I tried to explain the pain to the doctor, but he was much more concerned with my blindness and numbness in my legs. I even told him that I didn't care if I ever saw again, I could not live with the pain in my head. By Thursday, my eyesight was getting better, my legs were completely better, and I guess this was enough for him to start seeing my head pain as something that needed treatment stronger than Tylenol and Benadryl (he also tried a "cocktail" that involved Valium and an IV anti-inflammatory drug, but there was no relief). He ordered a cerebral angiogram to evaluate for aneurysms and vasculitis. This was done on Friday afternoon in Interventional Radiology and involved the doctor threading a catheter through the femoral artery in my groin up to my neck, then injecting dye, and doing scans to see how the dye travels through the veins in my head. Once again I was wide awake, but they numb the area with Lidocaine and they even gave me pain medication (the first time my head pain was adequately treated - I love IR). This test wasn't too bad, except the dye burned when it was injected. I could literally feel it going up my neck and across my head, but it went away quickly and had no lasting effects. They pull out the catheter, seal the hole (which required constant pressure for 20 minutes) with an Angio-seal, and I lay flat on my back for two hours. I do not know the results of the cerebral angiogram.

Blood Patch - The doctor's other idea regarding my headache was that it was possibly a low-pressure headache caused by the lumbar puncture. He believed that after the LP, the hole never closed up and my spine continued to drip fluid. This caused my brain to have insufficient fluid level surrounding it and when I sat up, my brain would "clunk" down against my skull and cause this headache. He believed this is why my pain was much more severe when I moved my head or set up even a little bit. The only difference from the classic low-pressure headache is that I still had pain when I was completely still and horizontal. However, my condition changed so dramatically when I sat up that he believed getting a blood patch was necessary. Now, there was a lot of drama surrounding this procedure and I won't go into that, but suffice it to say that the possible benefits of the procedure outweighed the long list of risks, so I went forward with it. The procedure was done after the angiogram on Friday night and I think it was a success. The procedure is done in an operating room by an anesthesiologist and mine was incredibly nice, smart, and generous with the pain medication. Basically, I sat up on the gurney and leaned forward like I was getting a chair massage. The spot was numbed with Lidocaine, and the anesthesiologist injected blood taken from my arm (by a nurse working simultaneously) into the base of my spine in the area of the suspected hole. He continued to inject blood until I felt slight discomfort and then I had to lay on my back for another two hours. The belief is that the blood will naturally clot and block off the hole, while also pushing the spinal up into the head to restore pressure. When I was finally able to sit up again, I felt immediate relief. It felt so good to be able to eat and walk to the bathroom.

FFP infusion - When I woke up on Friday morning, I expected to go right down to IR for the angiogram, but I couldn't. Blood tests revealed that all the plasmapheresis and anticoagulants (given by the hospital to avoid blood clots in patients) had caused my blood to be too thin for the procedures. The worry was not just about excessive bleeding, but also that my blood wouldn't clot when injected into my spine. They would not clear me until my clotting rates were back to normal. The solution was several infusions of fresh frozen plasma (FFP) and a shot of vitamin K. FFP is a blood product and therefore carries the same risk as a blood transfusion, so there was lots of paperwork to sign and strict protocols around verifying the donor and recipient. The first two infusions where done through an IV in my hand and it hurt. The FFP is ice cold and completely chills your body as it goes into the vein. They also had to start a new IV because they needed to use a larger gauge and at that point my veins were angry and didn't want to be found. It took nearly an hour to get stuck, but the infusion was quick. My levels were then high enough for the angiogram and they did the last two FFP infusions while I was in recovery. Since I was on the surgical floor and being watched more closely, they did those infusions in my neck catheter and I didn't feel it as much. I was also filled with pain medication and slept through them. By the time I was finished letting my Angio-seal stick, the infusions were done and I was ready to do the blood patch.

I think that's everything other than the daily blood draws and continuation of my regular meds. The hospital that I use is in the same group as my doctors, so I can see all the results, but I have no idea what they mean. All I know is that every day they took several vials of blood and tested for all kinds of things. I'm hoping that my appointments next week will offer more insight into everything that happened or at least rule out a few things. We'll see.

Also, I just read back through my updates on Facebook to see if I missed anything and I just want to say thank you again for all the love. I really can't tell you how much all the support and love meant to me.


The truth.

I know I promised a detailed post about all the tests and procedures that I endured during my last hospital stay, but I don’t know when or if it will happen. Even writing this has meant lots of deleting and restarting and giving up. And I know why. There are a few things about my stay at the hospital that I have been afraid of admitting and no matter how hard I try, I am incapable of composing anything post-worthy that excludes these facts. So, if I ever want to update this blog again, I need to be upfront and honest about everything that’s happening.

  1. The doctors think there is something else going on. Not that I don’t have multiple sclerosis, but that I have something AND multiple sclerosis. Most of the testing was done to find this mystery condition (including lupus and vasculitis), but with everything happening no one bothered to tell me what they found, if anything. To make matters worse, last week I got a call from the office of a rheumatologist who couldn’t tell me anything other than “your neurologist wants you to see us about a possible autoimmune condition.” Um, I already have an autoimmune condition, is this about a new one? Silence.
  2. I have had an excruciating headache for almost a month. It’s not getting better and not responding to any treatment. The worst part of this headache is that it has spikes and will suddenly become nearly unbearable. This means that even if I wake up feeling good, at any moment I could be struck with sharp, stabbing pains that last the rest of the day. It also means that I am spending more time in bed and things like eating, getting dressed, and doing chores just aren’t happening.
  3. At this time, I am not treating my MS. While in the hospital, I spent a lot of time thinking about the progression of my illness and how much sicker I’ve been since I started treatments. I might be wrong, but I think all the drugs and vitamins may have something to do with how I feel. While at the hospital, they suggested I may be interferon-intolerant and stopped the Betaseron. When I got home, I stopped everything else. I can’t say it’s the best decision, but until I have more answers about what’s going on, I’ll endure my symptoms.
  4. I’m more afraid than I have ever been before. I think this is the main reason that I keep putting off updating the blog. I can’t write about my time at the hospital or my life right now and hide the fact that I am terrified of what my life is becoming. Between the pain, fatigue, and sudden acute symptoms (blindness, inability to walk), I’m starting to question the plausibility of living a “normal” life. Seriously, how can I work like this? I also questioned whether I would make it home. I’m not trying to sound defeated or be overly dramatic, it’s just how I felt.

{exhale} When I got my diagnosis and started this blog, I never expected things to be so difficult so quickly, but they are. I’d be lying if I said that I’m handling things well, but I’m not. I have no idea what is going on with my body, I’m afraid of it getting worse, and my quality of life is pretty much gone. It’s not supposed to be like this and having the doctors agree with me but not offer answers isn’t comforting at all. I see the rheumatologist next Monday and my neurologist next Tuesday, hopefully I’ll know more then.

Tuesday, October 6, 2009

It's so good to be home.

I'm sorry that I didn't think to update sooner, but I was discharged from the hospital yesterday. I'm doing pretty well. I still have a headache, but my eyesight and legs are back to normal. Right now I'm just trying to rest and get back to 100%. In the next day or so I'll post a more detailed account of my stay. I did a lot of test and procedures that I can't wait to talk about.

I also want to extend my sincerest thanks for all the prayers, calls, emails, messages, texts, thoughts, and good energy sent my way. It can't begin to tell you what a huge role it played in my recovery.

Friday, September 25, 2009

In the Hospital again

Hi Folks,

This is Nilaja. Chris wanted me to let y'all know that she is back in the hospital. Around 7:30pm last night she called me into the bedroom and said "I can't see." Her vision has completely left her. The neuro on call told her to go to the emergency room and she was admitted into the hospital around 12:30ish.

Right now we don't know how long she's going to be in the hospital. They are running a lot of test and we'll know in a day or two the results and the course of treatment.

Chris is holding up well especially when they give her pain medication and she can sleep. Feel free to call her on her cellphone (text messages and emails are nice, but she can't see them). She has the cellphone with her at the hospital.

Thursday, September 24, 2009

Still in bed

I am nearing the end of my rope with this. I have never had this much pain, numbness, fatigue, dizziness, and light-headedness before and it's wearing me out. I have to crawl (and drag my left leg) if I need something (like the bathroom) but I don't have enough stamina to make it there without stopping to rest halfway. This also means that I have not been able to feed myself because even if I make it to the kitchen, I haven't figured out how to reach things. My wife left me her desk chair to use today to help me get around, unfortunately without the help of my feet, I can't move the chair across the carpet. I actually laughed out loud when I sat down and realized I wasn't going anywhere. I guess laughing is better than crying, I've done enough of that thanks to the pain. I'm starting to wonder if I should give this more time or if I should contact my doctor. I don't know if there's anything they can do over the phone and I obviously can't get myself there. I don't know what to do. Guess I'll go back to sleep.

ETA: I just had another surge of stabbing pains in my thighs, so I called my neuro. I left a message for the doctor and not just for the NP. We'll see what comes of this.

Wednesday, September 23, 2009

Not good and getting worse

If you follow me on Facebook or Twitter, then you know I'm going through a rough patch. Unlike the rough patch that I was having earlier this month, this time I'm having a lot of physical challenges along with my cognitive troubles. Since Sunday, it's gone from intense fatigue to not being able to walk, even with the assistance of my crutches. It's incredibly frustrating and demoralizing. I keep telling myself to be strong, it will pass, but I'm on day 3 in bed and am losing all patience with my MS.

Despite all the symptoms, I don't think this is an exacerbation. I could be wrong, but having had a major episode just 3 months ago, I can't see another one coming so soon after. Plus, this one is so different from the last. Last time it hit me quickly, but this time it's slowly building up and getting worse. But you know what, exacerbation or not, I feel like crap.

As of this morning, my entire left leg is heavy and numb and so is my right foot. My legs are covered in prickly, burning hot pain that runs all up and down them and gets worse in any spot that's touched. I also have a pressure (like my head is being squeezed) and stabbing headache on the right side that's causing my eye to throb and water. I'm incredibly fatigued and sleeping all day and all night with little difficulty. When awake, I'm pretty alert, but I have moments where I completely zone/space out and can't think at all. This is one of the more puzzling symptoms, because when it happens I feel like I completely disconnect from my body and am just sitting next to myself. It's really strange.

So, I'm just trying to cope and let my body heal. I see the neuro next Wednesday and am gonna try to tough it out until then. For now, I am thankful for the internet and that we have a tv in the bedroom.

Wednesday, September 16, 2009

30 Things

Thanks to one of my favorite blogs, Definatalie.com, I was alerted that it is National Invisible Chronic Illness Week. Multiple Sclerosis is often described as an invisible illness, especially for sufferers who don't use mobility aides. To commemorate this week, I've decided to complete their "30 Things" meme. Enjoy!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Multiple Sclerosis

2. I was diagnosed with it in the year: 2009 (March 5)

3. But I had symptoms since: at least 2002-2003

4. The biggest adjustment I’ve had to make is: There are several. Learning to listen to my body and not dismiss random sensations. I have to accept when I'm tired and not get down on myself when I reach my new limits. Being ready for unpredictable bladder control. All of the cognitive challenges are giving me a tough time. I feel dumb and spacey, especially when I can't form sentences or remember things that should be easy to remember. I've also lost some really close/meaningful relationships since getting my diagnoses and it's been hard adjusting to people seeing/treating me differently.

5. Most people assume: People often see me with my cane and assume I hurt my leg. I think some people assume I've changed a lot, and I don't think I have.

6. The hardest part about mornings are: Trying to shake off the grogginess and drag myself out of bed. I also have a lot of morning pain and stiffness, so sometimes I have to lay there for 30+ minutes just to gather up the strength and courage to move.

7. My favorite medical TV show is: House.

8. A gadget I couldn’t live without is: My iPod touch. Everything is in there, appointments, medicine reminders, and important records. I have it with me at all times.

9. The hardest part about nights are: Relaxing enough to get over the pain and restlessness to fall asleep. On good nights, I fall asleep in 30-40 minutes after laying down, but it could take hours to get to sleep on some nights.

10. Each day I take __ pills & vitamins. 8 different types, but a total of 15 pills throughout the day. I also do a subcutaneous injection every other day.

11. Regarding alternative treatments I: The only alternative treatment I try currently is Vitamin D. I am not yet ready to try something alternative as my main treatment, but am open to supplemental treatments.

12. If I had to choose between an invisible illness or visible I would choose: I don't know how to answer this. Can I choose neither? Hmmm, maybe a visible illness? I don't know.

13. Regarding working and career: I want to work again, but honestly I'm afraid of getting back out there. Maybe this is because of my recent difficulties and in a few weeks I'll be back on my feet. I'm still optimistic and applying for jobs everyday, but I don't know how successful I will be when I can't find words or remember why I'm qualified. We'll see.

14. People would be surprised to know: I'm much more afraid and worried about my prognosis than I give off. I try to be strong and optimistic, but I'm terrified of what the future holds. I also still have falls and bladder accidents, though I try not to talk about it.

15. The hardest thing to accept about my new reality has been: Giving it a place in my life. Especially now that the symptoms are too much to ignore or suppress, I am constantly aware of being sick. Oh, and all the pills and injections, I hate them.

16. Something I never thought I could do with my illness that I did was: Dancing at the wedding without being tired or in tons of pain. That was the best.

17. The commercials about my illness: I haven't seen any. At least I don't remember seeing any...

18. Something I really miss doing since I was diagnosed is: Not caring. Not caring about what I eat or when I eat. Not caring what time it is or what day it is. Not caring if there are bathrooms nearby or if it's going to be warm.

19. It was really hard to have to give up: Going out and roaming around all day alone. Since my symptoms are still unpredictable, I rarely go out alone and when I do, I don't spend a lot of time out.

20. A new hobby I have taken up since my diagnosis is: Painting. I don't do it often enough, but I love it.

21. If I could have one day of feeling normal again I would: First, I don't know what normal is or remember how normal feels. If I could have a day without pain or fatigue, I would go for a walk along the bay or a day of shopping. Then I would watch a double feature and get a huge drink. Later, I would eat a good meal and enjoy a few glasses of wine, then spend the evening dancing.

22. My illness has taught me: To appreciate life. Even during the most difficult times, there are reasons to be thankful. It's also taught me to plan and be prepared.

23. Want to know a secret? One thing people say that gets under my skin is: Well, I HATE when people offer me a cure. HATE. I also hate when people try to "help" me manage my condition or try to persuade me to do what they think is best for me. I also don't like being told that I look good or seem happy, especially in response to me saying that I feel ill.

24. But I love it when people: Let me rant. Visit me or invite me to visit them. Send me funny internet links. Chat with me online.

25. My favorite motto, scripture, quote that gets me through tough times is: "He'll never put more on me than I can bear." It's from a Kirk Franklin song. I don't talk about my faith often, but I do identify as Christian and find a lot of strength in religion. I truly believe that no matter how tough life gets, it is never more than I can handle. Music also gets me through the rough times, which is another reason why my iPod is essential.

26. When someone is diagnosed I’d like to tell them: Stay strong. Life isn't over when you get a diagnosis, it's just taking a different path. If you believe you can make it through, you will make it through.

27. Something that has surprised me about living with an illness is: It sucks. No really, it sucks. I never expected to have so many crappy days or feel so shitty all the time. I'm hoping that in the next few months I'll get back to a place where this all feels manageable.

28. The nicest thing someone did for me when I wasn’t feeling well was: Visit me. I really really really like having visitors and appreciate when people come say hello, invite me to hang out with them, go to movies with me, or take me for coffee (just to name a few). Human contact makes my day.

29. I’m involved with Invisible Illness Week because: It's really easy to forget that people all around us are suffering whether we can see it or not. I decided to post this as a reminder that health and ability go beyond what we can see. Life is hard whether we can see it or not.

30. The fact that you read this list makes me feel: Loved. Appreciated. Heard.

Friday, September 11, 2009

Shitty.

For the past week or so I've been trying to sit down and wrangle my thoughts, but failing miserably. I am having a really tough time and even a visit to the neuro didn't offer any answers. I can't even describe what's going on with me and maybe that's why the visit was unproductive. But I'm alive, my pain is being managed, and I'm walking. Not sure I can ask for or expect anything more.

Wednesday, September 2, 2009

My Day at the Hospital

Today I went to the hospital to do my gastric emptying study. It was a pretty easy test, but I would prefer never having to do that again. My test was scheduled for 8:30 am and as usual, I arrived early. I had to wait for the secretary to come back to her desk so I could get signed in, but I didn't mind because I brought my iPod. The sign in process was really quick and they took me right back to start the first part of the test.

The way that it works is they have you eat a food that has a drop of radioactive isotope stirred in. You can't see the "dye," but they can use a special camera-like (in that it takes pictures) device to detect where the dye-stained food is in your system. Pictures are taken at various intervals to see where the food is and according to those results they can estimate the rate that your stomach empties. Obviously, a doctor would explain this different and give you more accurate details, this is just my explanation of the test as it happened to me.

Anyway, once they took me back they gave me two options, oatmeal or eggs. I happen to hate both, oatmeal for the texture and eggs for the smell, taste, and texture. I've been known to eat both, but with lots of seasonings and add-ins. Since I like oatmeal a little more and it doesn't have to be chewed, I chose oatmeal. 30 seconds later, the tech came back and informed me they were out of oatmeal so he was preparing the egg. I said OK and figured it couldn't be too bad. I WAS WRONG. A moment later, I was presented with a paper cup with a spoon in it. When I looked into the cup I was greeted with very fragrant, piping hot scrambled eggs that were microwaved in the paper cup. That was the first time I gagged. I was then warned that I needed to chew them in order for the test to work and told to get started. Let me tell you folks, this was the most vile thing I've ever eaten. The only thing that could have made it worse would have been eating mysteriously soggy bread. Not bread artfully dunked in coffee or tea then consumed, but a piece of crust left found in the sink after you empty out the dishwater. The eggs were disgusting. But I ate them, because I had to eat them.

After ingesting the dye, the tech took a set of pictures. To do this, I laid down on a very narrow concave table and a large ring slide over my head down to my chest. A horizontal plate was lowered to just a few inches above my chest and I was told to be still. The tech took three 1-minute long shots of my stomach (two from the top and one from below) and then helped me up. These first shots were taken just before 9 am and I returned to have more pictures taken at 10:30 and 12:30. Then I was free to go.

Of all the tests and procedures I've had done in the past couple months, this was one of the easier ones. It really sucked to eat the eggs and all the waiting around worked my nerves, but it was non-invasive and fast. The tech said the results should be ready tomorrow, but I probably won't get that information until I see the gastro on Sept 14, unless there's something that warrants another call at home. Speaking of which, I haven't gotten the lab forms yet, but will probably go out to have that done as soon as I receive the form.

Tuesday, September 1, 2009

Organized.

From the time I posted last night until right around lunch today, I was dead set on my next post being a long list of why I have the right to be upset about the LFTs (liver function tests). I planned to explain how I logically know that there's nothing to worry about, but my emotional/irrational side has more reasons for me to wig out. And then I completed a project that I've been working on for years and wanted to take the time to brag about it.

Today I sorted, filed, shredded, and recycled the huge pile of miscellaneous paperwork that I've been holding on to since college. It was mostly mail, pay stubs, receipts, important letters and such, that just needed to be organized. But with my hoarder tendencies, I have always had a hard time going through the pile. Of course, once it gets out of hand or I'm preparing to move, I start to tackle the pile and kinda get it organized, but I never finish it. And I never truly purge the unnecessary stuff. I toss out a few things and then return the whole pile to a box or plastic grocery bag. This has honestly been the trend since college and I've carried various forms of this pile from Maine to California and it has grown with each move around the Bay Area.

The hard part came with our move to our current home which is small and doesn't have a lot of storage space. I had one box full of papers that I hid in my closet and a huge pile of current mail and documents that covered the floor just outside my closet. On top of this pile of papers I tossed clothes, pillows, purses, and pretty much anything else that I didn't feel like putting away. This pile routinely gets knee-high and Nilaja will coyly ask, "how do you get in your closet?" and I'll know that it's time to sort out the big items (like toss the laundry into the hamper). To be fair, I don't think Nilaja really cares about me being messing and often tells me to sit down when I get into my cleaning frenzies (which have never included tackling the pile), but the pile of crap was monstrous and often encroached on my safe passage to the bed.

I knew it was time to tackle the pile when I was talking to my gastro and had to paw through the crap on the floor in order to find the notebook where I keep my current health info. It was ridiculous. So I got up nice and early, ate a sensible breakfast, put on a podcast, and set out to tackle the monster. I started with the box in the closet. I looked at each page and sorted into one of three piles keep, recycle, shred. Then I took the keep pile and separated by type (pay stubs, credit card statements, health info, etc). The good thing about taking a second look is that I could decide if it was something I really needed, like an envelope full of wine articles ripped from magazines or a 4-year old collection of blank New York Times crossword puzzles. Purged. Once things were in their categorized piles I could easily organize them (reverse chronological order) and put them in my file box. I did the same process for the stuff on the floor.

The whole process took about 3 hours without breaks and I feel so relieved. I've wanted to complete that project for years and I'm glad I was finally able to do it. That made for an amazingly productive day and I look forward to never having another pile of crap ever again.

In other news, I called and scheduled the stomach emptying study. It's tomorrow morning at 8:30 am. I don't know how long it will take since it's done in intervals and it will keep going until they get all the results they need, but that's a good thing. I think this procedure will answer a lot of questions when it comes to the pain and nausea. I'll tell you all about it tomorrow evening.

Monday, August 31, 2009

Bad news.

I have so much I want to say and write about, but I just received a call from my gastro that has me quite distracted. He just received my latest blood test results and my liver function tests are "extremely high." I think he said the numbers are quadruple what they should be. I don't know what this all means for me, but he has me scared. I knew that Betaseron could do awful things to my liver, but I didn't know exactly what these awful things were. Notably, he mentioned that it could create some sort of autoimmune Hepatitis as my body begins to attack my liver. Lovely. He told me there isn't much he can tell me from the one general blood draw that he had done, but he's going to collect my history and he's sending me a more detailed order that he wants me to do ASAP. Interestingly, I've had liver function tests done before and the last time, July 22, was a few days after I started taking full doses of the Betaseron and one of my tests was elevated. I told Dr. H all of this and he asked me for two specific numbers from the results (which I have on hand), AST and ALT. In July my AST was high normal while my ALT was slightly elevated (deemed "not clinically significant"). Now they are both elevated. Really elevated. The good news is that my ultrasound was clear and my liver looked normal. He also cleared me to do the emptying study, so I'll call in the morning to set that up.

But folks, I'm worried. I really don't need something else to go wrong.

Thursday, August 27, 2009

3 years and family

Yesterday was the anniversary of my coming to California. I wanted to mention that in yesterday's post but I was in such a hurry to post it and already dopey, that it just didn't happen. I know you're thinking, "Chris, you posted that entry at 7:04 pm." Well, the timestamp is 7:04 pm. Actually, I posted it just after 10 pm. I guess the timestamp corresponds to the time you open the posting window and not when you click publish. And no, it didn't take me 3 hours to compose the post. I'd actually written my first sentence when my sister called and we got to chatting. I really do love talking to my sister on the phone. We haven't always gotten along, but as adults we're best friends. We easily have 2 hour conversations about every topic under the sun. That's what happened last night, we talked about the advantages and disadvantages (primarily) of weight loss surgery, weddings, and Christianity all in one conversation.

Talking to her also made me wonder if I've ever written about my family. I know I've mentioned them in rants before, but never given you a clear profile of them. How many of you knew I am a middle child? I am. I used to call myself the "extreme" middle child because my sister is 6 years older and my brother is 6 years younger (he sometimes comments here). That's just enough years to ensure that we never had the same friends, never attended a school at the same time, and it puts us in different generations. We were raised by my parents in Gary, Indiana. We all left home as after high school, but I'm the only one who settled outside of Indiana. My is the only one to give my parents grandchildren, 2 girls and a boy), but Nilaja and I are hoping to change that in a few years. I was the only one to do 4 years of college and I graduated from Colby College in Waterville, ME in 2006.

Which brings me back to California. I haven't always liked living here, but it's grown on me. I actually couldn't imagine leaving here now. Especially since I finally have my health care organized. Oy, I can't even imagine what it would take to recreate this network. But I'll do it if I need to. I'll just groan the whole time!

Wednesday, August 26, 2009

I left the house today!

Even though I was unable to workout this morning due to the pain and fatigue, I managed to leave the house today. Yay! It almost didn't happen though. See, I had to go to the post office to pick up a certified letter that the carrier couldn't be bothered to ring the bell and deliver yesterday. The post office isn't very far, about 3 blocks, but when I'm having a bad day that seems like miles. I also hate going to that post office because the entrance closest to my path and destination has stairs and the ramp is on the opposite side of the building. Although it's less than a full flight of stairs, in my head there is several flights of very steep stairs without a railing. But I also don't want to go to the other entrance because in my head, it's a mile away to get to it and I have to walk that same distance to get to the necessary area to retrieve my letter. Basically, when I woke up this morning the simple trip to the post office seemed as difficult as an unguided trek up Mt Everest.

After an hour of trying to get myself out of bed, dressed, and ready to go with no success I was almost ready to quit trying when a friend suggested I come visit her and another friend if I made it out. I knew she worked in the area, but I didn't know that her office was on the floor above the post office. (I didn't even know there were offices above the post office!) As a person who spends the daytime alone I couldn't pass up an opportunity like this. That simple invitation was the boost I needed to get dressed (I even put a little makeup on) and get my errand done.

Seeing those two friends today was really great. Although I am having a bad day with pain, fatigue, and cognitive difficulties, the whole interaction went really smoothly. They even played the "what is that person's name" game with me where I can't remember someone's name and go off into a whole description of the person while they guess who I was talking about. (Side note: I love that game and greatly appreciate when people play it with me and help me figure out the name. I've become really self-conscious about my cognitive difficulties and have been afraid of having more social interactions, but having them be so patient was really good for me. This time it was Anne Hathaway.) They even invited me back to visit them again and I just may take them up on it if I'm going down there or if I bake cookies or if it's been a while since I've been out and I just need to get out.

I like this getting out the house stuff. I think I'm gonna do it more often. It's good for me.

Tuesday, August 25, 2009

Life is good.

I had a rough day. Woke up in striking amounts of pain and then after the workout, took a nap and slept until 11:34. I really hate when I sleep past 9 am. It's not that I have anything to be awake for, but I still don't like sleeping all day. The worst part is that I had to force myself to wake up at 11:34 and couldn't get out of bed until after 12. Argh!! I only managed to stay awake (mouth open staring off into space) long enough to eat and take my first dose of medicine. Then back to bed.

Normally, a day like today would have me depressed and worried that I'm having a huge set back. But other than being annoyed, I'm OK with it. I was obviously tired and overworked from all the cleaning yesterday, so I needed to sleep. Tomorrow will be better. Actually, this evening has already been better. I'm in an oddly good mood and loving it.

You know, usually when I'm in the moment and I feel the pain or I start feeling fatigued, I suddenly get really down and depressed about it. I forget that the symptoms, at least for me, fluctuate in severity. I may feel like crap today, but if I rest and take care of myself, tomorrow or the next day will be better. Now I just have to remember that during the bad times. Or keep working at not overworking myself and causing these bad days.

Monday, August 24, 2009

Feeling Better

First, thank you for all the emails and Facebook messages. Your kind words were a big help in raising my mood. I promise I will respond to them all, just give me a little time. I was under a pretty dark cloud until Saturday afternoon, but it wasn't anything a bus ride and my favorite surroundings couldn't fix. By Saturday afternoon I was back to my old self. I am also happy to report that after several weeks of not having the energy or drive to do anything around the apartment, I finally got ALL my cleaning done today. That's right, I got all the dishes washed and put away, I vacuumed, I cleaned behind the toilet, and even did some spot removal on our carpeting. It feels so good to be able to clean. I don't know if I've told you all, but cleaning is one of my favorite hobbies. I would rank it right after singing but before cooking (I am so weird). So, it feels good to spend a day listening to podcasts and scrubbing our apartment.

All that cleaning also got me thinking. To be honest, I didn't think about anything new, I just figured out a possible partial solution to a complex problem. Money. Let me tell you, having a chronic illness and trying to maintain some level of wellness is an expensive endeavor. Be it maintenance care (like monthly prescriptions or follow up doctor visits), to acute care (like ER visits or hospital stays), to supplemental items (like vitamins or quality-of-life items), even with decent medical coverage, the costs of trying to be as healthy and happy as possible can quickly become unaffordable. I'm at that point. Well, I was never in a position where I could afford to be sick, but the costs of trying to be as healthy as I can be have surpassed the resources. Between the hospital bills, all the new prescriptions, the influx of doctor visits and prescribed physical therapy, plus all my household bills, the well has run dry.

While, I can't stop treating my illness or seeing my doctors (well, I can but I'm not going to), I have decided to eliminate as much extra stuff as possible. This includes all vitamins and supplements and sleeping aids. I am also going to try to cut down on my use of bladder control pads, which may mean more neurosis, but they are crazy expensive (even the store brand) and if I only use them when I go out, I can stretch that cost over several months. I am also going to speak with my doctors and see if I can see them every 6-8 weeks instead of every 4 weeks. And I decided that for now, I'm not going to do the physical therapy for my shoulder. I know it's important to maintain my non-MS-related health, but PT isn't feasible right now. I'm sure between my network of friends and my awesome Google-fu, I'll figure out ways to help my shoulder. And if not, I can focus on my shoulder after we figure out my stomach issues.

Speaking of stomach issues, I need to call the gastro and find out what's going on with the emptying study and if they saw anything on the ultrasound. I don't know how much longer I can deal with all the nausea. The Prilosec is not helping.

Oh, I also have two new symptoms to report. First, I'm starting to have significant numbness and tingling on my face. It's such a weird feeling and very different from the numbness I feel in my hands and feet. It's only on the right side of my face mostly around my upper lip and usually happens in the morning. Though, it's tingling right now just to spite me.

The second symptom is very distinct memory loss. I've had small moments of forgetfulness for a few months, but recently acknowledged that there are recent events that are completely gone. I'm having a bit of a hard time with this because my memory was once one of my best traits. Now there are lists upon lists upon lists and I still forget. I'm sorry about all the birthdays I keep missing. :-( But it's not all bad. Now that I realize I'm losing some things, I'm spending more time tracing memories and exploring the things I do remember. For example, a song will come on the radio and it'll feel oddly familiar. So, I'll think about it and maybe remember that it's something I heard in college. Instead of leaving it there, I'll try to remember where I was or who I was with, and the next thing I know all the emotions and laughter of the original event are back. (Hey guys, remember "Run by Collective Soul?") I love this. I am such a sentimental-nostalgic-emotional creature and these personal little moments are the best. And by some miracle, these memories are usually really happy and remind me just how much I am loved and love the people that I call family and friends. (I know I'm a loser and don't keep in touch, but I still love you.)

OK, enough sentimentality for tonight. Time for bed. By the way, I'm still looking for part time or gentle full time work. If you have any leads, please email me. Thanks.

Thursday, August 20, 2009

Bad Day

I know it's only 7:39 am and I've been awake for 24 minutes, but I'm having a bad day. A really bad day. The kind of day where I'd take a sleeping pill right now to sleep the day away and another to get me through the evening until tomorrow. But I can't because I have my ultrasound today and I can't miss that. Though I want to miss it because I'm having a lot of anxiety about it. Yes, I know that it's non-invasive and I'll basically just lay there while it happens, but that doesn't alleviate my nerves. Along with the anxiety, I'm exhausted, I'm having sharp shooting pains all over my body, I have a headache, and I feel shaky. Oh, and my brain is moving really slowly. Every few seconds I find myself staring off into space and I can't focus. Ugh, I'll probably forget something and end up crying. I hate this, I hate this, I hate this. Why can't I just be "normal."

Tuesday, August 18, 2009

Today's problems: Fatigue and Spasticity

Today I slept until 10:22 am. OK, that's not entirely true. I actually ignored the 4:30 alarm and crawled out of bed at 4:54, just in time to get dressed and head to the fitness center with Nilaja. I don't think I mentioned that we are getting back into our morning workout routine. It's going pretty well and I'm even back on the treadmill. Defiantly of course, but to my credit, I am not pushing myself like I was before, I don't go on days when I haven't slept, and if I start feeling numb, overheated, dizzy, or light-headed I stop. (See, even I can overcome stubbornness.) After the half hour workout, Nilaja gets ready for work and I head back to bed with my ice water. I usually go back to sleep, but am up having breakfast by 9 am.

Today was different. When our alarms went off (we use separate alarms and mine goes off just seconds before Nilaja's), I didn't even open my eyes because I was exhausted. I don't even remember hearing Nilaja get out of bed. And then for some strange reason I woke up at 4:54, realized Nilaja hadn't left yet, and decided to ignore the fatigue. Sometimes I do the dumbest things. Doing the treadmill was harder today than it was the first time I tried after the hospital. My legs felt like they were made of lead, my head was foggy, and after only three minutes, the heat started. I thought about stopping, but I wasn't going very fast, the incline wasn't too bad, and my feet weren't numb. Stopping didn't feel justified. I made it through and headed to bed just as tired as I usually am.

And then I slept, and slept, and slept. On one of my rollovers I caught a glimpse of the clock and was shocked to see that it was after ten. I can't remember the last time I slept that late without having a fever. To make matters worse, it was 10:22 am and I wasn't awake enough to get up. I laid there for another 40 minutes before I was able to stand up. And the prize for standing, spasticity. My legs felt stiff and the muscles were so tight that I thought I would rip them if I stretch my legs. I had mild spasms in my calf muscles, but thankfully they went away after I moved around a bit.

I hate days like this. I'm too tired to move, but have to, and when I do it hurts. I managed to get some food around noon and I've only gotten up from the dining table once since then, to prep the vegetables for dinner. Days like today are great reminders that I need to do what I can when I can. I never know when my pain levels or fatigue will be higher, so I can't put things off. I also can't get too upset when my plans have to change. There will be time for chores and baking on another day. Today I'm going to sit at the dining room table, listening to music, and resting.

Monday, August 17, 2009

Easily Distracted.

So, I'm sorry that I haven't updated in over a week. I've been meaning to do it, but I discovered a jigsaw puzzle website (jigzone.com) and it has been getting all of my attention. Well, not ALL of my attention... I also spent last week watching season 2 of Mad Men in preparation for the premiere of season 3 and following a new food and medicine schedule. Basically, I've been distracted. The good news is that I'm starting to get back on track and updates should come more frequently, hopefully.

I've actually been quite busy on the health front. I had a follow up neurological appointment on August 7th and it went really well. I met with the nurse practioner again and I have to say that I really like her. I took a list of things to talk about with item number one being pain. She didn't have a pain specialist to recommend me to just yet, but she did tell me that I could increase my pain med, gabapentin. Apparently, the dose I was taking was just on the lower edge of what she felt was a good therapeutic dose for me. So, instead of taking 900 mg (300 mg capsules 3 times a day), she wants me to take 1800 mg. I'm slowly increasing the dose, as directed, and at this point I'm at 1500 mg. On Friday I go up to the full dose and I think we're finally getting somewhere when it comes to pain relief. You know, when I started taking the gaba, I was taking 100 mg, as needed. Hilarious.

She also gave me more Lyrica, which I'm supposed to take twice a day. However, I'm only taking it at night because it makes me sleepy. I was a little frustrated when I discovered that side effect, but it's working amazingly well when it comes to my insomnia. Speaking of insomnia, it was number 2 on the list. I told the NP that just like the lorazepam, the temazepam worked for a few days and then the insomnia returned, (though now that I realize the Lyrica makes me sleepy, I don't know if the temazepam ever worked). Instead of prescribing something stronger (which is what I wanted), she prescribed a sleep study to be done by my primary neurologist. It's a little frustrating to not get what I wanted, but I agree that there's a bigger problem and we need to figure out what that is instead of just medicating it. Unfortunately, the sleep study isn't until September 30th. Argh!

After we finished talking, she did her normal exam. Not much has changed, I still have decreased vibratory senses, minimal stiffness, and for the first time in years, a perfect visual field test. She was ecstatic. I showed her all the bruising and welts at my injections sites and she was shocked to see where I was doing them. She didn't have any suggestions for the reactions, but did tell me to only do them on the tops of my thighs. I'm finding these sites easier, but just as painful as the other places. From there we somehow started talking about my general non-MS related health and I told her that my primary care doctor is an idiot and I'd rather go to the ER than see her. The NP told me that I needed to have a good PCP and recommended I see one of her collegues. I see Dr. S on Wednesday and I'm super excited to finally have a competent PCP. I'll let you know how it goes.

My next appointment was last Monday, the 10th. In the morning, I woke up with a lot of pain. It was my usual non-MS pain and I knew I had to see my chiropractor. I've only been in to see her a few times since I stopped working for her and it's always a little awkward to go back, but I needed her help. As soon as I woke up, I texted her begging to be fit in. She was able to squeeze me in and I got to see her that morning. I wish her office was closer because I really need to see her more often. I felt so much better afterward. I still need a lot more work done though, and I'm hoping to start squeezing her in on the days I have to go to Berkeley for other appointments.

On that same day, I also had my follow up with the gastroenterologist. While I'm sure he's a great doctor, his office staff and bedside manner could really use some work. I hate feeling like I'm a bother to office staff. And it's not that I had any questions or needed anything special, but the person who brought me back seemed incredibly hassled to have to show me the way and take my weight. Nilaja was with me and the rudeness was so strong that she even asked if I could find a different gastro. I'm really hoping it doesn't come to that.

When we finally got to see the Dr., he seemed to listen to me and really take my complaints seriously. I was pleasantly surprised that he didn't come in with a predetermined diagnosis for me and he also didn't tell me what he "thinks" it is before getting the test results back. I appreciate that because I honestly don't need to spend any time obsessively researching and worrying about another condition that I may or may not have. Instead, he ordered an abdominal ultrasound (scheduled for Aug 20th), a bunch of bloodwork (I'll do that on the 19th), and some sort of controlled study to see how my stomach is emptying. Right now I'm waiting for my insurance to authorize the last test, but hopefully they'll do that soon.

When it comes to the medicines, he took me off of two of the stomach medicines and increased the Protonix. He didn't want to give me anything for the nausea, and recommended I split my lunch and dinner into two meals each (5 meals a day insted of 3). I tried that last week and although there wasn't any vomiting, I still had some nausea. Worst of all, timing the meals out and coordinating them with all the medicines made me neurotic. My entire day revolved around when I was supposed to eat and which pilsl I needed to take. I know that may sound silly, but there are days when I forget to eat or forget to take pills. And with everyone stressing how important it is to eat regularly and take all my pills, it put all my focus into following their orders. And since I don't have the ability to multi-task anymore, it literally meant that I spent the day watching the clock and was completely unable to get anything done.

This week is different. I'm back to three meals a day and I'm taking the pills at meal times. The key is to have breakfast when I get up, before I do anything else and I have lunch when Nilaja takes her lunch. It seems to be working since I've gotten all my pills in, ate breakfast and lunch, and was able to get some cleaning done, update here, and even make chicken stock. I like being productive. Now I need to get off the computer and go make the bed and start dinner.

Sunday, August 9, 2009

Why I cut my hair for a stranger.

Today I met a little girl named Ruby. Ruby is 3 years old. Ruby has Acute Lymphoblastic Leukemia. Cancer. She is also one of the happiest, most energetic people that I have ever met. Today, I cut my hair off for her and it has made my day!

A week or two ago a friend of mine, Jenn, posted on Facebook about a party for one of her friends, Ruby. I was intrigued and asked for more information. She told me that Ruby was recently diagnosed with cancer and her parents were throwing her a head-shaving party, which they cleaverly titled "Shear Solidarity: A Fun(d) Razor for Ruby." I thought, "What a great idea," and marked it on my calendar. Even though I wasn't ready to shave my head and didn't have any money to give (I'm still trying to figure out my own medical bills), I thought it might be nice to go to the party to share my support of the cause.

Then, on one of those sleepless nights recently, I started to think about the event and what I could do to really show my support and I immediately knew I would cut my hair off. I mean, why not? I complain about all the energy it takes to maintain my hair and have wanted a more carefree hairstyle. I really don't understand why I was so apprehensive about cutting it. So, instead of getting it professionally braided, I'd cut it all off.

Honestly, though I'd been looking forward to the party, I was also a little hesitant about it. I've never been to a head-shaving party and wasn't sure what the mood would be like. Would it be a somber event where we each trudge up for our chance in the chair after waving at poor little Ruby lounging in her seat? Or would it be one of those parties where the reason for the gathering is the big elephant in the room and everyone tiptoes around hoping not to break one of the metaphorical eggshells?

To my delight, it was neither. Ruby's party was the hightlight of my week, maybe even my month. Everyone there was so full of joy and happiness. When I met Ruby, the first thing I noticed was her big smile and pretty blue eyes. She was sitting in a red wagon, but that only lasted for a few minutes. Once she arrived to the park, she was up and running around just like all the other kids and not missing a beat when it came to being a kid. It was fantastic. And then I met her parents, Mars and Ben. Mars is one of those women who walks into the room and everyone smiles. She radiates enthusiasm and sunshine. Seriously, when I met her I did one of those goofy smiles that makes people think I've just taken pain medication. Her dad was such a great guy, too. He was charming and made me feel right at home with him and his friends and family. I love that feeling.

Mars was the first to get her hair cut. She'd parted her red hair into tiny little ponytails and allowed everyone who'd donated the opportunity to cut one off. As each lock of hair was chopped off by the party guests, Mars cheered them on. By the time it was my turn to get cut, I was pumped. After watching Mars celebrate her hair being methodically chopped off and then shaved to the scalp, I couldn't squirm about mine. I hopped right into the chair and sat still as my shoulder length hair was whacked off in preparation for the clippers. No second thoughts.

Now that I'm home and Nilaja has had a chance to rub her hand over it and offer her approval, I have to tell you that I am so glad I went and even happier that I cut my hair off for Ruby. I think I would have been happy I did it no matter what, but doing it for a great family was an added bonus. They are such good people and I think they are handling their situation with strength and grace. I don't know what it's like to have cancer or a close family member with cancer, but I do know what it's like to have a chronic illness. And while it's not fun and games all the time, it does make the days go faster if you take a few moments to laugh. I only spent a few hours with them, but I know that over the 2 1/2 years that Ruby will be having daily chemo therapy treatments, there will be tons of laughter. And when this is all over, when Ruby beats this, the laughter will continue.

I may have just met Ruby and her family, but I hope there will be more occasions for me to share their joy. In just 4 hours, they taught me more about living happily with chronic illness than I've learned in 5 months. These are lessons I'll never forget.

(Here are a few pictures that were taken after a shower, which means no makeup.)












The family is still accepting donations. If you'd like to help Mars and Ben pay for Ruby's care, please visit this website they have set up. You can also find more information about Ruby and her family there.

Thursday, August 6, 2009

"Just in time" appointments

Today is my followup appointment with the neurologist. I'm super excited to get back in there and discuss all the problems I'm having. In the past month, I think my pain and disordered sleep have gotten worse. Despite all the prescriptions that they have me on, I'm still suffering. I'm hoping that when it comes to pain I get an actual script for Lyrica (or something stronger) and that they set me up with some sort of therapist to help me deal with pain. On nights like tonight, I know that it's the pain keeping me awake and if I only had something to dull it a little, I'd be so much better off. I think it would also help my mood. Yeah, I know mood swings can be apart of MS, but most of my snapping and jerk behavior is exacerbated by the pain.

When it comes to sleep, I'm ready to try something designed for sleep, rather than a drug with sleepiness as a side-effect. Each time I try one of these drugs (usually anti-anxiety/anti-depressants like lorazepam or trazadone) they work for the first few nights and then they stop working. I tried taking them as directed, every night for the first week then every other night thereafter, but at this point they aren't working at all. And the worst thing is that when they do work, it takes about 2 hours before they kick in. So, if I don't take it from 8-9, then I'm up a creek. I mean, I usually don't realize I have insomnia until midnight or later and if I take a pill then, I'll sleep all day. Which means the same problem the next night. But, and here's the kicker, if I have insomnia and stay up the whole night, I am no more likely to sleep the next night, even with a properly timed pill. So I need something stronger, even if they only give me a few pills to break the cycle. Hell, two really good nights of sleep each week would be a thousand times better than what I have now! We'll see what they say.

I also finally have a firm appointment with the gastroenterologist set for Monday at 1:15 pm. Despite two weeks of calling obsessively, I couldn't get anything sooner. I'm actually pretty upset about it because I called and left messages 4 times a day for 5 days before I got this appointment. It was ridiculous that his assistant wouldn't call me back and I'm not looking forward to dealing with someone who can't return an urgent phone message. I completely understand if you can't get me in right away, but at least call me back and say that. She also wouldn't listen to me when I asked to get my scripts from the hospital refilled, so now I'm a week without my meds. Add on all the crap from last week and I might be looking at more drastic medical intervention. I still have my fingers crossed for all the medicine and hopefully he'll add something for nausea which would be a lifesaver.

Tuesday, August 4, 2009

Making changes

I'm officially applying for jobs again, YAY! I'm actually really excited about working again. I think it will be good for me to get back out and start using my brain again. Currently I'm only applying for part time work which will be easier for me to ease my way into, but within the next few months or so, I'd like to be back up to full time. Wish me luck!

I want to cut all my hair off. I've worn it very short before and loved it. I think it will make my life so much easier and will help me conserve energy. Even though I cut it all off before, I'm still a little afraid. I've become really attached to my hair and can't stop wondering if I'll regret the cut. I was the same way last time. I actually talked about it so much that my good friend Nicki picked up a phone and made an appointment for me. I had 30 minutes later, my hair was gone and I loved it. Maybe I should do that again...

I bought a domain name and am currently working a website for My Journey with MS. It's still being formatted and worked out, but within the next month we (the blog and hopefully all of you) will be moving to a new site. YAY! Once the site is up I'll post links and keep this site live for a while.

I'm still having tons of sleeping issues. I'm hoping that my appointment with the neurologist on Friday will yield some better sleep help. And pain help.

Saturday, August 1, 2009

Top 5 Things that I Learned Last Night/This Morning

1. I cannot go two consecutive nights without a sleeping aid, even if the first night was restless and I resist taking a nap. I've been awake since 8:16 am Friday morning. I actually woke up at 4:04 am, but managed to get back to sleep after Nilaja left for work (at 7 am). My doctor suggested I take a pill every other night and I should have taken one last night, but I thought I was tired enough to get to sleep without it. I gave up trying to sleep around 3 am.

2. There is nothing good on tv after 3 am. I watched a few cartoons and a few infomercials, before I gave up and tried to be a little more creative and productive.

3. Trying to paint when I have insomnia results in a huge waste of materials. I made two attempts at a nature scene with sky and wild flowers. The first is unbalanced and the colors were off so I put it to the side unfinished. The second looks like a kindergartner got a hold of some paint. It's so bad I didn't even sign it.

4. The numbness and tingling in my legs goes wild when I don't sleep. I wish there was a way to show you how painful this can be.

5. The absolute worst thing for a headache is not sleeping. I'm fairly certain that the stabbing headache I had all day yesterday was a result of not sleeping well on Thursday night. So imagine how I feel that I still haven't gotten any sleep. Please someone come take the knife out of my skull.

Thursday, July 30, 2009

The 3 R's: Resting, Rehydrating, and Reading

I am FINALLY keeping food down on a consistent basis. Yes! I still have the nausea, but I can work through that. Now that I'm eating, I have enough energy to sit up for more than 10 minutes and I even spent most of the day sitting on the couch versus sleeping in the bed. But I'm not pushing my luck, for once. I'm fighting the urge to clean and organize the apartment. Instead, I'm resting. That's right, I am living amongst the chaos for the sake of my health and will not do any obsessive cleaning... until tomorrow. By then I'll have most of my energy back and can try to get into a routine again.

One of the things I always neglect when I get sick is my hydration. When I don't eat, I don't drink. I know I should, but I forget to go for water when I spend the day in bed. And to be fair, early in the week, I couldn't keep liquids down, so there wasn't anything sending me running for water. But now that I'm starting to feel better and eating, I'm so thirsty. In the past half hour I've downed two pints and I'm sure the next few days will see much of the same. I wonder if I should set a water alarm. I mean, I have alarms set for pills, injections, and, on bad days, food and bathroom breaks, maybe my memory needs that additional hydration reminder boost.

One of the few highlights of this week has been taking time to catch up on my Google Reader. At the beginning of the week I had 1000+(once you it 1000 they stop counting, but I'm estimating there were at least 1250 unread items) posts to read and I'm already under 400. I hadn't spent time reading since before the hospital visit and even though I made attempts to catch up before the wedding, not much was accomplished. So, I'm glad I'm getting through it all. So much happened in the past month and I was completely oblivious, but soon I'll be caught up and able to discuss current events soon.

Wednesday, July 29, 2009

F-ing Miserable

My stomach is messed up. Really really messed up. I can't stop puking and gagging. And even when something stays down, I spend HOURS completely nauseated and on the edge. You know what I mean? I have that feeling you get just before you puke -- watery eyes, lump in my throat, metallic taste --, but I don't puke. It's gotten so bad, that I've gagged up Pepto Bismol, the smell of food makes me gag, and now I'm afraid to eat. Good news: I don't have a fever. Bad news, I haven't lost my appetite. It's cruel really. I'm having all these cravings and if I think about the food too much, the gagging starts. I'm absolutely miserable.

Now I'm thinking that the hiatal hernia is getting worse. Did I mention that before? Well, while I was in the hospital, Dr. Cooper ordered an endoscopy to figure out why my stomach was reacting so violently to the steroids. The result was that I had a hiatal hernia, but I was told that it is small and a month or two on a few (three) stomach meds would alleviate the nausea and heal the hernia. Until the wedding day, I took the pills religiously. There's one I take 4 times a day, 1 hour before food or two hours after. The second has to be taken before eating, three times a day, so I take it with the first pill. The last one is easy peasy, I take it once a day with my vitamins. There were a couple days where I didn't get them all in, but something is better than nothing. And honestly, once or twice out of a month shouldn't have led to me being so ill.

So, I'm going to make an appointment with the gastro that did the endoscopy and try to figure out what's going on. I'm having a lot of anxiety around this because I don't want him to say that I need surgery and I really can't afford more care right now (I already owe him money). But I can't continue like this much longer. I'm currently force feeding myself chicken soup because I nearly passed out in the shower a little bit ago (a shower I wouldn't have needed if my MS wasn't also playing with my bladder control today). Hopefully, they can see me tomorrow or Friday.

In other news, I've decided that I need to start working again. I know that sounds absolutely ridiculous after everything I've just written, but what I get from the state isn't enough to make ends meet. And honestly, the anxiety from all the debt and bill-worry is making me sicker than sitting behind a desk a few days a week. Plus, I think it will be good for my brain and general mood. Unfortunately, finding jobs is incredibly difficult right now and then when you add in my limited stamina and abilities, my options get pretty slim. But, I'm gonna stay positive and if anyone local has leads on part-time desk work or telecommuting jobs, please email me.

Tuesday, July 28, 2009

Back to bed

I've been trying to get up the strength to do a proper update, but it just isn't happening. My body is on full revolt. In addition to my typical MS symptoms, I'm having a hard time keeping food/drinks down, my entire left side hurts, and I'm so tired that I can hardly keep my eyes open. I spent the last two days sleeping in bed and I can already tell that today will be another one of those days. I makes me want to scream! I can't wait for this cycle to break.